On November 14, 2007 our healthy and athletic son was diagnosed with advanced stage IV Burkit’s Lymphoma and Leukemia. This blog is a journal of his courageous journey as he battled this aggressive cancer. With the grace of God and the help of an incredible community, Tyler went into remission in August, 2009. He is now a strong and healthy student at The Ohio State University.

Wednesday, May 27, 2009

Daniel Houser - A Chemo Man Hunt

I remember every detail of those first days in the hospital. Every meeting with doctors provided worse news. Each test brought worse news. The cancer was more aggressive and more advanced than initially thought. We were thrown into an unknown world, completely unprepared.

I immediately began contacting every doctor, hospital, pharmaceutical company, research lab, and patient I could find throughout the country and around the world. By our 3rd day I was in contact with Abraham Cherrix, a 16 year old in Virginia who was refusing chemo for his lymphoma. Doctors had petitioned the courts to force Abraham into chemo, but the appeals court allowed him to continue his natural treatments. Abraham sent me volumes of information on the "illegal" herbal treatment he was receiving in Mexico. That was almost two years ago, and he is now in complete remission.

Today we are all reading about the man hunt for 13 year old Daniel Hauser. He and his mother were fugitives on the run, as police hunt him down to force him into court ordered chemo. Daniel, with the full support of his parents, has also chosen to use natural treatments to fight his cancer. But the doctors disagree. So the FBI and Interpol were called to track down Daniel. The search went first into Canada, and then Mexico. Turns out they were in Minnesota the entire time.

I am amazed at the media coverage of Daniel Hauser, and would really like someone to help me understand what is happening. Daniels doctors said he needed chemo, and had the courts force him into compliance.

I really do not know Daniel, so I have no opinion of what is the right decision in his case. But I do have a concern about who is making the decisions. Consider his story as it relates to a couple of other stories, ones that never received media coverage.

Brett Workman had cancer, and he was begging for more chemo to continue his fight. But in Brett's case the doctors refused. They said his body could not handle more chemo, so they sent him home to die. But what was the risk? Everyone agreed Brett would soon die without treatment, so what was the risk of more chemo? There were more clinical trials available, but the hospital was not participating in them. Brett wanted to fight, but the doctors decided it was time for him to give up.

Sinjin Andrukates was also told there were no further treatments. He was told to go home and die. His mother went on the attack to save her son, in a battle against an incredible bureaucracy, With great efforts from many people, the hospital finally reversed their decision. They allowed Sinjin the right to fight. Sinjin is now in remission.

Mason McLeod has been written of more than once, but he continues to fight. He is a living miracle. At one point his insurance company decided to cut off payments for a treatment the family believed was necessary. The family fought through that, and won. His parents continue to look for options. They refuse to lose. And Mason continues to exceed all expectations, despite the opinions of others.

Rachel Tippie was also told her time was up. The doctors decided there were no options. Hospice was called in, and it was time to go home and die. But Rachel decided to fight, ignoring the doctors unanimous opinion that there were no remaining options. So Rachel's family went out and found more options, and doctors willing to pursue those options. Rachel is doing much better and awaiting her stem cell transplant.

So here is the question. How gets to make these decisions? Doctor and judges? Hospital administrators and insurance companies? Congress or the president? Who tells us when we should fight, how we should fight, and when it is time to lay down and die? Who has the right to make these decisions? What kind of society do we really want?

During our first days in the hospital, information was presented as though there was only one clear choice. But that is almost never true. There are many options and many decisions. I believe the problem is often that the doctors are just very confident in their opinion. I would certainly expect that of them. But their confidence can steal from us the right to make informed decisions, decisions that belong to us.

As we struggled to get clear answers during those first days in the hospital, we crossed paths with four incredible people. Personally, I credit these four people with saving Tyler's life. They gave us no medical advice. In fact, 3 of the 4 we knew only through emails and websites. But they demonstrated an incredible will to fight, with families willing to leave no stone unturned.

Each one of them, in very different ways, profoundly impacted on our decisions. I will be forever grateful. Last year I printed their names on my Team Tyler jersey, as I ran the Columbus Marathon to raise money for cancer research. Their names will be there again as I run this years marathon. Their names are Brett Workman, Christan Barker, Issac Lieser, and AJ Piniewski.

I would like to share the lessons they taught us with their lives.

1. Leave No Stone Unturned: There are no clear answers in cancer. There are multiple solutions to every problem. And you will find reputable doctors to support almost all of them. Keep asking questions, and keep searching. You do not need to try every option, but you should understand them. Make sure your decisions are truly informed.

There is not a single medical facility that holds all the answers. Everyone of them has their specific areas of strength. None are "right" or "wrong", but they are different. Get to know them, and be confident you are in the right place.

2. Doctors: There is a hierarchy among doctors, and oncology is high on the list. Your doctor therefore is among the top in his field. This brings an incredible level of confidence that allows them to make daily life and death decisions. This confidence in necessary, but it makes it nearly impossible for them to objectively present opposing opinions. To make an informed decision, you must meet doctors at facilities with a very different approach.

Do not allow your doctor to refer you to someone else. They will naturally refer people they respect, and that person is likely someone with a similar approach. That is not a second opinion, it is only a confirmation of the first opinion. A second opinion is not about doubting your doctor. You are obviously confident in your doctor, or you would not be there. You are not checking for mistakes. You are looking for a different approach, a different perspective toward treatment. As King Solomon said in the Bible, there is wisdom in seeking the council of many experts.

3. Statistics: As Mark Twain said, there are three levels of lies. There are plain lies, damn lies, and statistics. When making decisions, make sure you understand where the statistics are coming from. Too often statistics are quoted without an explanation of the data. As an example, stage IV Burkitt's is quoted as a 60% survival rate with the french protocol. But that percentage is an average of all stage III and IV "B" cell lymphoma's. To get more accurate number, I used the Internet to track down specific cases. I found 48 people matching Tyler's profile. They were all teenagers (47 boys, 1 girl), advanced stage IV, over 50% bone marrow involvement, and received the french protocol. Of the 48 I found, not a single one survived. Do not make decisions on numbers without having the data.

Remember also that there are limits to statistics, involving many variables. Every child is different. Every situation is different. As parents, we wish we only heard two statistics. 0% relapse and 100% remission. Unfortunately those numbers just do not exist in cancer. Whether things are going good or bad, they can always change. As Lance Armstrong says, the odds do not matter. 1% or 99%, you still have the same two options. Fight like Hell or lay down and die.

4. Plan B: Cancer moves fast. You do not want to be researching for new options when there is little time left. Right now be researching plan B. Know your plan of action if this treatments does not work. Know the markers that define success, and what would cause you to change course. Have a plan "C" and plan a "D". Plan for every contingency. You do not want to start your research after options have run out. It could be too late.

At each step, I knew what we would do with Tyler if the treatment did not work. Even when things finally started working, I always had the contingency plans. Today, Tyler is strong and doing great. We will soon be passing the very crucial "one year in remission" mark. We celebrate and thank God every day for the miracle. But through this year, I also knew the hospital, doctor and treatment we would immediately jump on had things gone a different direction. As they say, expect the best, but prepare for the worst.

So those were the lessons we learned from four amazing young men and their families. You must always take charge. You must make fully informed decisions. It's not easy to do when you first hear the words "your child has cancer". But nothing about cancer is easy. You cannot even think straight, and every fiber of our body wants someone to step in and tell you what to do. Kathy's first words to the doctors were, "Please just tell me he's going to be okay!" You are on information overload, and just want absolute answers. In an attempt to help, doctors often simplify options with generalized explanations. They tell you the "best" treatment, because that's what you desperately want to hear. Their intentions are good. But you must retain control. The doctors are there for expert advice, but the decisions are yours to keep. You know your child better than anyone.

Always fight. And always fight to win.

Team in Training:

I am a little late getting started on fund-raising. I will be running both the Columbus and Tampa marathons to raise money for cancer research. If you would like to sponsor me, you can go here. I keep a mini training log there if you would like to keep undated.

The training to get to the Columbus Marathon is 543 miles. I'm 35 miles into it (Wow. Only 35 miles in 21 days. How do I get back to 26.2 in one day?).

All the money is tax deductible, and goes to the Leukemia-Lymphoma Society research fund.

2 comments:

Sinjin's mama
said...

We have to get you on to a talk show!!!!! You touch our hearts with each and every post. Your words ring true your advice is solid...we would know, because of your support and encouragement my Sinjin is still alive today.Some one sent me this site and I would like for you to read what this mom has to say about Stand Up To Cancer...I do not know why I am in shock.http://www.strawberryseeds.net/ I wish the phrase No Child Left Behind was the motto for all our children fighting cancer...fighting for their very lives each day. Damm Cancer!!!with unstoppable hope for all our kidsSinjin's mamawww.caringbridge.org/visit/sinjinandrukates